Our new life

The reality of having a child with special needs is something you can never really be prepared for. How could you possibly prepare when you can't even know the extent of your child's needs or all of the "consequences" of his different conditions? Our journey with Judah has only just begun, but already our lives are forever changed. I've been asking "why". I don't know if there's really any point in asking that question. There will never be answers (this side of heaven) to the why's I'm asking...and yet that word comes to mind completely unbidden. And often. The more I find out about Judah's different health problems or conditions, and what to anticipate with some of them, the more I ask - "Why, God?" I think the question stems from feeling totally inadequate, fearful, and a sense of unfairness. I am not adequate to care for Judah. I am fearful of all that we are facing. I find it unfair that this is happening to my son and to me. I never wanted a 4th child. I certainly never wanted a child with special needs. The funny thing is, I want Judah. I'm in love with him completely. That's partly what makes this so hard. The more you love the more you hurt, right?

Medically speaking, Judah is...complicated. So complicated. So many of his systems are effected by his syndrome. The genetics specialist doesn't have a name yet, but she said that all of his birth defects can be linked to one cause. One point in time when something went "wrong". I use quotes because I still have to believe that God only does right. I question, but that doesn't change my core belief. I do wonder, though, what God saw in that point in time. He was there, He knows. Wow. He was there in that exact moment when one cell, or one tiny piece of a DNA strand, or whatever it was didn't form normally. I'm not sure if that's comforting or maddening. Maybe a little of both. I still believe that God knew in that moment that Judah would bring more glory to Him as the child He created Him to be, than as a "normal" kiddo. Anyway... Judah is special from head to toe. His brain developed abnormally. He will most likely have developmental delays. Whatever that means. His pituitary gland is underdeveloped and does not function. Major problem. That controls the hormones in your body, etc. He'll be on hormone replacement therapy for the rest of his life. Always going back to the endocrine clinic to be monitored and have meds adjusted. His cortisol is being replaced by hydro cortisone. When his body undergoes stress, I have to "stress dose" him. That means something as minor as a fever to the stomach flu could potentially become life-threatening. Vomiting means that I have to give him his hydro cortisone via injection. There's a whole booklet that covers just his cortisol replacement therapy. He's on thyroid medication. He'll eventually be on growth hormone and testosterone replacement therapy. This will effect his blood sugars. His body's ability to hydrate itself normally. It's complicated...and it scares me. His clefts will effect his speech, possibly his hearing. His palate effects his eating now. He'll have dental issues later. Etc. His kidneys not only have reflux, but are underdeveloped as well, because of the severity of the reflux. So, he's much more at risk for dehydration. His kidneys won't conserve fluid, so a fever or the flu, or some other minor kind of sickness will more likely land him in the hospital to get hydrated and treated. When will he be able to be potty trained? Good question. He'll probably eventually be on medication to control how much his kidneys can put out...otherwise they'll continue to put out without stopping. That's more of a side effect of the pituitary though. He'll probably always be small. They're watching his bones. The ones in his big toes are very small. Makes for super cute feet, though! He'll be followed closely for...ever maybe. Our nurse case manager set up all of his follow-up appts. for us. It took her over 2 hours, and when she was done she came to us and said, "Oh my.". Not a good sign! But, thank the Lord for help like hers. That would've taken me days. He has appts. with several different specialists and teams of specialists. There will be more appts. when the procedures - the first being to repair the clefts - start happening. Judah has his own day planner. He'll get his own Medic Alert bracelet. His own therapists for every kind of development. His own special equipment; including what the home health nurse brought over yesterday when I had to reinsert his NG tube. He came home without it, but in 48 hrs. gained only 7g instead of 40. His pediatrician told us that he'll probably be hospitalized a couple of times before October because of dehydration issues for different reasons. Why put all this down? That's not even everything, but what's the point? I don't know. I guess processing things this way is just a part of my grieving process. It's gonna be a long process. A painful one. I didn't ask for this. But I have to cling to my core beliefs. The things that I know to be true about God. He is Good. Faithful. Love. Grace. Mercy. He knows and does what is best for us. He creates us for His glory. He desires intimacy with us...me. He is always with me. And He is waiting for me at Home. I'm not sure how all these things will translate in the midst of the daily grind that I find myself in...the new normal. But they're true. Each and every painful step of the way.